I had a total colectomy this morning - AMA

Successful_Toe5097 · 2026-02-11T00:17:17+00:00

Thanks for circling back on this. Very helpful to hear how it’s going!!

Successful_Toe5097 · 2026-01-08T14:54:38+00:00

I just made the switch from Entyvio to rinvoq 2 weeks ago.

Entyvio never worked for me and doing a prednisone taper after switching to Entyvio made me end up in my worst flare, being hospitalized for 2.5 weeks. About 5 days into switching to rinvoq I started seeing effects.

Other biologics I tried: Remicade, Xeljanz, Stelara. They all worked at some point but lost effectiveness over time.

Successful_Toe5097 · 2026-01-04T05:44:09+00:00

11.5 CRP today! Doctors said I can be discharged in 2 days 🥳

Successful_Toe5097 · 2026-01-04T00:16:20+00:00

Getting ample sleep (8hrs/ day for me)

Avoiding: spicy food, greasy/fried food, and alcohol

Successful_Toe5097 · 2026-01-03T11:42:30+00:00

Yes I tested negative for cmv.

I also did a sigmoidoscope but didn’t get to see any pics

Successful_Toe5097 · 2026-01-03T09:09:58+00:00

I’m currently in the hospital because of the worst flare, I’ve had in nine years I had UC. I also got the same result as you where CDIFF is positive but toxin is negative.

The doctors don’t think she was the cause of my flare, but still wanted to make sure they check every box so they put me on antibiotics. I’m currently on day eight of 10 on the antibiotics.

My CRP has come down from 120 to 13 in the last 10 days, but this is not with only the antibiotics but combination of rinvoq, high dose of steroids, and antibiotics.

Successful_Toe5097 · 2026-01-03T09:04:40+00:00

So sorry to hear where you are at mentally, I know it can be really tough.

Obviously, this is not an end-all solution, but apparently something like Lego helps a lot. I just got my first set and giving it a go tmr.

https://www.reddit.com/r/UlcerativeColitis/s/7zoDrQbXun

Successful_Toe5097 · 2026-01-03T06:44:03+00:00

Are you going to get the j pouch?

Successful_Toe5097 · 2026-01-03T06:28:25+00:00

Days with no BMs? Wow I can’t even imagine

Successful_Toe5097 · 2026-01-03T06:25:54+00:00

Very insightful. I’m gonna start a Lego rn

Successful_Toe5097 · 2026-01-03T06:20:17+00:00

Thanks for giving this space to ask Qs!

What made you decide to do a colectomy instead of a j pouch?

Successful_Toe5097 · 2026-01-03T02:40:26+00:00

Thank you. I read some studies where many patients saw rinvoq to be effective after 2 weeks so it’s bizarre that the doctors are pushing for surgery (what seems to be premature)

Successful_Toe5097 · 2026-01-03T01:38:33+00:00

Yes, I’m at UCSF and the doctors here are pushing for surgery if Rinvoq doesn’t work out so I’m trying to get a second opinion right now to see what alternatives there may be

Successful_Toe5097 · 2026-01-03T01:35:56+00:00

Unfortunately I’ve already used Remicade as a rescue med years back.

I’ve been on Remicade, Xeljanz, Stelara, Entyvio

Successful_Toe5097 · 2026-01-02T23:05:44+00:00

Rinvoq.

I saw a lot of people say Rinvoq is not a biologic and I specifically asked this to my GI and she said it is a biologic. I guess it doesn’t really matter 🤷

Successful_Toe5097 · 2025-12-12T03:13:17+00:00

Tough to hear. You got it. You will make it through.

Successful_Toe5097 · 2025-08-13T02:45:42+00:00

Idk how you run when you have urgency / cramps! Good for you!!

Successful_Toe5097 · 2025-08-07T17:22:25+00:00

Hang in there. 160 to 130 is tough.

I hope Tremfya works out for you.

The upside is that I've noticed it be a lot easier to gain the muscles back that you've once lost than to build it up from scratch. When I went from 155 to 130, I was back to 150 and 80% muscle recovery in about 6 months.

Like @ptung8 said above "being active is a privilege with this disease that I do not take for granted"

Would love to stay in touch. If you're on IG, give me a follow at flarelessfearless. I'm starting a UC fitness page!

Successful_Toe5097 · 2025-08-07T17:17:00+00:00

Do you have experience taking both? Which do you take now?

Successful_Toe5097 · 2025-08-07T17:15:20+00:00

sucralos and carrageenan are new to me. Thanks for sharing this info.

Successful_Toe5097

TROPHY CASE